annually 17 April, many countries are joining in the action of the World Federation of Hemophilia and celebrate World Hemophilia Day (World Hemophilia Day).
The overall objective of the activities is to draw attention to the problems of haemophilia and do everything possible to improve the quality of medical care that is patient this incurable genetic disease.
According to some estimates, today the number of hemophiliacs in the world is 400 million people (one out of 10 000 men). According to the World Health Organization in the territory of Russia is home to about 15,000 people with hemophilia, of which children are around 6,000 people. More exact number nobody knows, because in Russia there is no national registry of patients with hemophilia.
Queen Victoria, conveyed many of his hemophilia descendants (Photo: www.scientificamerican.com) Until recently, few of sick children lived to adulthood (average life expectancy of people with hemophilia in Russia is 30 years). Currently, the arsenal of Russian specialists appeared innovative therapies that significantly improve the quality of life of patients and increase its duration. Further, newer treatments hemophilia — a highly purified preparations containing the proteins are not of human origin, which makes them safe from the viewpoint of potential virus infection.
With enough drugs with hemophilia can lead a fulfilling life: study, work, raise a family, that is a full member of society and benefit the country.
But- still insufficient provision of antihemophilic drugs leads to early disability and especially children and young people with haemophilia.